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ajw4790

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About ajw4790

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  • Birthday 01/01/1984

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  1. Howdy! I know I don't post much anymore, but I am having a bit of an increase in symptoms, even for me. And was hoping you all might have some good ideas etc. My absence from the site is not due to no longer being symptomatic. I am still as symptomatic as ever for the most part. I am still on meds, but they have not changed recently. I was about to make a change, but had not yet. Also, no changes in supplements, drinking, salt, exercise, or eating habits. I have had long periods of insomnia before 4-8 days, but they were always linked to medication or extreme heat and humidity. But, now I have not slept much for almost a week. I have had small bits of dowsing off, "sleeping" for 15 min. to an hour or so, but never much longer than an hour and not a good quality of sleep. And I don't sleep more after that hour. I am awake and see almost every hour on the alarm clock, but it is across the room so it isn't like I am starring it down. I have tried sleeping a different times of the day, because I am a natural night owl. I am not anxious or have a busy brain keeping me from sleep. I am not currently working or in school. My only appmts. are doctor related, so those can be easily canceled if I am not up to them. I can not figure out why I can not get comfortable and just fall into a good sleep. I also tend to get more energy and am bouncing up in down in bed once I lay down. It is like my body does not want me to sleep. I have also had some of the most energy I have had in a long time the past few days. I think it may be because of less of an orthostatic shock every day, because I am not sleeping and laying down for long periods. My brain is working better too. It seems to be opposite of what should be.... During the day hours I tend to feel 'amped' up, kinda like the adrenaline is flowing and not really taking a break. I have started CPAP over the past few months, and was using it prior to this, but since this started I have been unable to tolerate it. The weather changes do seem to have something to do with everything. It has been so weird. I have gotten the amount of chores done in one day that would normally take me over a week. Anyone had something like this? Any ideas? Ambien not work for others? How much do you need to have it work? Thanks for any help!!!
  2. Hi Jennifer! Sorry we have not "chatted" in a while... I haven't been spending a much time here on the boards lately. More because I am on overload with health issues than that I am feeling better and hitting the town. I am exhausted, but I saw this thread and wanted to comment. I hope I make sense! First, I am sorry that you are having to go through this too on top of everything! Hopefully it will stay as stable as possible, and causes the least amount of problems possible. But, I am glad that your doctors caught it before it progressed. Your dr. does not sound like they are the most supportive or proactive of doctors. Maybe over time you can find a different one that is willing to do more than read test results. Those drs. are super-frustrating! I wanted to chime in here to not only send you my well wishes, but also with discussion of my own recent medical issues in that area... Hmm, where to start? My gyne sent me to Urologist when I was having increased menstrual pain and bladder pain/cramps/contractions. Long story and semi-difficult to tease out what is what... Have you seen a Urologist? Anywho, first Uro. was a dud, second is much better. They have helped me to see that my shrugging of this occasional pain may not be too smart and are doing a good work up to see what all is up. So far I have learned that I have enlarged kidneys and a huge trebeculated bladder. I am still in the midst of the workup which has included urine testing, ultrasound, cystoscopy, and urodynamic testing (I hold insane amounts of urine- I almost overfilled their cup!). I still need to get my CT scan done and go back for my follow up appmt. to learn what all came from all this testing. I got a UTI from the cystoscopy and that has slowed me down from my already slow self. And I am working on adjusting to CPAP that I started a couple of weeks ago... Way to much medical crap! Have you had any of these tests? For me they were projecting that either this is my weird "normal" or that I have neurogenic bladder. He explained that the kidneys can become enlarged if the pressure in the bladder is too great and urine leaks back into the kidneys. This can then cause damage to the kidneys. So, I was not sure if they have looked at the possibility of structural issues or neurogenic bladder? How did they test your GFR? Are you still taking prescription meds or only herbal meds? Any chance meds you took in past or current could contribute to kidney function? Any indication of a hereditary issue? what symptoms do you have? I think that is all for now. Time to sleep... hope that made sense... I will try to check back tomorrow.
  3. My issues got quite a bit worse and led to my having to leave school shortly after having my Hep B vaccinations. I was going into the health care field and required those vaccinations to continue on in my studies. I too have wondered about whether or not the vaccines triggered or worsened something for myself. I too had wondered if this could also be part of the link of so many health professionals having a dysautonomia diagnosis. As far as how it all works or doesn't work... I know I had a few abnormal blood work numbers and I looked them up because they were never explained to me. They were autoimmune related, but I do not remember what they were. They normally signify a certain disease or something, but it did not fit for me. Reading more I think at one point I read where vaccinations can cause this autoimmune reaction in people. So, I started to wonder/figure that the vaccines may have had a role in my decline, but no real proof etc... This blood work is now at least two years old. Earlier this year I believe I saw I had the same blood work and it was closer or in normal limits. But, I think the damage must have already been done, because nothing has gotten all that better for me. I hope that more research is done about this and that answers are found. I do think that for some people this could be enough of a trigger to jumpstart all of these autonomic issues. Thanks for bring the info forward. Is there any studies etc. that show this link? Where does this info come from?
  4. DINET is absolutely wonderful as an organization that educates and helps patients, caregivers, and families with dysautonomia. It is also great as a resource for any individual looking to learn about dysautonomia, because they know someone with it etc. DINET is also wonderful for many other things that I don't really think I need to list. I love DINET and everyone who has worked tirelessly to make it possible. There are also a few other sites and organizations that also work on awareness and being a source of information. BUT, there is no ONE organization or association for Dysautonomia that works like the American Diabetes Association or Multiple Sclerosis Society. Or if there is such an organization I am not familiar with it (and it clearly has room for improvement). How do these organizations come to be? Anyone have first hand knowledge of this kind of thing? Or have family and friends that might? How would this work for people like us? I think there are WAY too many things being overlooked, ignored etc. right now because there is not one main organization or oversight committee for individuals with Dysautonomia. And without some kind of organization like this I do not see things improving greatly over time. Things that I am concerned about or think we need an organization to deal with: - We need a group of doctors that perform research and treat patients with Dysautonomia from many hospitals/clinics/cities that communicate and work together to form more cohesive definitions of the terms used to describe, diagnose, and treat us. There is too much of a difference between locations, and it is hurting us as patients with getting treatment, insurance etc. - We need lobbyists and other political people to work in our favor in the political realm. People to lobby for bills to be in our favor, work to keep our few available treatments available to us, and to help target the right people to further research and developing treatment options for us. - We need one place that oversees everything and everything gets reported back to. - We need a place that our current doctors can reach out to and get reputable information. And not one answer from one institution and yet another answer from another institution. - We need an organization to recruit and train knowledgeable doctors on Dysautonomia. (I am getting more and more concerned on this one as there is already so few specialists, and many of them are not teaching a new generation of specialists.) - We need an organization to seek funding to make these things possible. There are many more things, but this is what came to mind... Am I the only one that feels like this? Is there something out there? How does something like this happen? Any ideas out there?
  5. Yes, I have hand tremors. Like others have said there is many different tremors. I guess one could say that I too have multiple varieties of tremors. My main tremor is an Essential Tremor- for me it is a Familial (or genetic) Essential Tremor. But, much of all my symptoms have some genetic link or origin. The tremor was also my "first" obvious symptom, first treated, and sometimes one of my most impairing of accomplishing tasks. It isn't very noticeable until I try to do anything with a heavy object or need fine motor skills. I too learned when the dr. said something by mistake that they too thought originally that I had Parkinson's. The tremor originates in the same place in the brain. One of my other tremors (which could also sometimes be called an exacerbation of the ET) is an Orthostatic Tremor. This is like when I stand for a long time especially with heavy backpack on and my legs go crazy tremoring. Also, can get with holding heavy loads to long with arms, or holding a position too long. Also, I have gotten for hours or a whole day that super annoying thumb tremor. It has a mind of its own. It is not as fine of a tremor as the normal ET. It is very bouncy or ballistic and I think it has a higher frequency that the normal ET as well. I have gotten the thumb tremor normally after being on the computer for a long period or some other constant stress on the stretch receptors of that region that seem to just make the tremor go berserk. None of the tremors are supposed to be bad, just annoying. And there is not a lot that can be done. You can try meds etc. They help me some, but not a lot. I take Primidone. It took me 3 months to work up to the dose that would be best, and it was absolutely an awful transition period. I don't suggest this med except as one of the last things to try. If I ever have to work my way off of it, there is no way I will work my way back up on it. Tremors are not fun! And even though there is something for others to see with a tremor, it doesn't really help. Others just think you are anxious or in drug withdrawal or something else far from the truth.
  6. Angela, ***Disclaimer: My brain is not working the best right now.*** I was trying to follow your post and question. If I understand correctly you went to CC and saw a neurologist? And he is having you return for tests? Part of the thing I learned there is there is not great communication between neuro. and cardio. and each knowing what each other does. I think they have been working on it, but I know I had that issue. At CC the standing (Head Upright TTT- HUT) is done in their autonomic lab (neuro.) and the "sitting" Hemodynamic TTT is done in cardio. So, from what you said I am assuming that you are asking about the Hemodynamic TTT??? As far as it being ordered because "you are worse", I feel is not exactly the case or less that is what he said, i think it is ordered frequently there now for anyone that fits certain criteria. They look more at the body's blood volume and amount of pooling that one has. So, there is probably more of a question or concern about blood volume and where it "settles". If this is what you are talking about, myself and others have discussed it some before on here. It is quite a detailed explanation of the two tests that they lump together and call the Hemodynamic TTT. I know for me it was probably the hardest and most symptom causing TTT of the 5+ that I have had. They were very good about responding to my needs etc, but when I reached "that point" I felt awful and it took FOREVER to try and bounce back from and then got a monster migraine on the way back to the hotel. I was in Columbus/Cincy at the time. I want to stress that you likely need to stay the night or at least rest for a few hours. I think it took 2-3 hours. They do EKG, BP, HR monitoring, and scans to show blood pooling throughout the test. They give you iodine and a radioactive tracer. They take some blood. There is a lot of laying still on the hard table. Make sure you are comfortable before they start, my back hurt bad afterwards. Mine showed that my blood volume was more or less normal. Borderline iron deficient anemic. Hyperkinetic circulation. BP crashed after sitting for however long. I think HR went up at least 30 BPM too. It pretty much just said what the other test had said, but didn't clear up much of anything. It did show that I do having blood pooling issues, even when lying down. But, the testing did not change anything for me. You may want to make a return appmt. to have one of their cardios explain the results. I never got a very good explanation, but I also did not feel that they would see me to explain it, because it wouldn't make much difference. Hope that helps, and makes sense. My brain is a bit mushy...
  7. Hi, I just wanted to quickly add (b/c I am not having a great brain moment right now) that the dr. probably said that you have hyper reflexes or are hyperreflexic, but from what you describe I do not think that he was meaning that you have autonomic hyperreflexia. Because that occurs in individuals with a severe spinal cord injury, and symptoms can be life threatening for those patients. I too have very hyper reflexes, so I know where you are coming from with that. I hope that makes some sense...
  8. Thanks everyone! By just putting this out there and being able to "talk" with others helped a lot! I was having trouble getting to and staying asleep some before this, but after my post I crashed! And it was a relatively restful sleep too, it was nice! Thank you to everyone who took the time to read my post and to post back as well! I am still trying to wake up and get my brain working, so I think I will have to reply to everyone more later. I realize now I got my medical terminology mixed up- I did mean laparoscopy and not laparotomy. Whoops! For the iron supplementation- I started down the route of infusions because I can't tolerate the iron pills, even one a day or every other day. I went up a bit from 3 to 13 over a year, but am going back down again to 9. So, I need to do something. It is one of those stuck between a rock and a hard place deals. As far as why it is low, there has not been much speculation or knowledge there... Not due to bleeding though. More likely not being absorbed correctly due to intestinal issues. So, not sure if infusion is best way to go? But, not sure what else to try. A lot of the foods that are super high in iron are hard to digest or high in sugar, so diet does not seem to be all that good of a choice either... I guess I consume quite a bit of calcium, which is probably not great for things, but there are so many things I can not eat. I was told to try OJ with the iron pill, but I have not been able to drink that stuff since I was very young- way to much acid! Not sure if Vitamin C pill would work? More later... I am still physically exhausted even after some decent (for me) sleep. Thanks again to everyone!!!
  9. Hi again to all! It has been a while, yet again. I just have such a hard time spending much time on the board anymore. Things move so quickly, there are so many questions, and so much scientific discussion that my brain seems to just shut down. I want to participate more, but when I try I sound so incredibly stupid when I try to make my mess of thoughts make any sense in words. I am so over that issue/feeling! I want to be able to actually communicate! More and more things have continued to occur over the past few months, that I seem to be in this endless cycle of trying to get somewhere with my health care and being my own advocate. Then like clockwork someone wears me down and I just try to avoid everything health related for a while. I am sick of this cycle. I also am tired of days that are just trying to get sleep, drinking plenty of water, taking my medicine, eating enough salt, and trying to choke down some food. Too many days of water, salt, meds, food, sleep, and that is it. Past few days I couldn't even bring myself to be online much. I tend to spend a lot of time online, but I prefer mindless activities that I don't have to see other peoples lives or "talk" with others. I am just too overwhelmed to deal with any of these things. Anyone else ever feel like this??? So... why do I feel like this? The medical staff that seems to always make things 10x more difficult than it needs to be is part of it. Another is facing yet another calendar full of appointments. I have had a bit of a break which was nice, but I am not really wanting to go on my very own "summer medical tour". I also have had another round of hit and misses with medications, which is always rough. Propranolol for the 2nd try was a big no-no, and most recently tried a bladder spasm medication that caused dilated pupils, headache, palpitations, and seriously increased my restless leg symtoms. But, get this it actually HELPED for once! But, of course I could not tolerate it! Boo! I am waiting on a 2nd sleep study since I moved they want to redo it here, and then maybe finally getting to treating the sleep apnea. I also have to see a hematologist to get the iron infusions to bring up my iron and ferretin levels. So, both of those are multiple appointments. Then appointments with my PCP, and then gastro. and derm. eventually. And then the newest and also likely cause many appointments with the gynecologist. It is all just too much again after Feb. at Mayo for 8 days of testing. I am normally a big "near fainter", but I hardly ever actually faint. But, I did recently faint for the first time in a long time. So, that is kinda hard too... The bladder pains and spasms have gotten worse. Then with my last period the cramps and pain were a whole lot worse. That is what caused me to faint. Long story short, they think it may be endometriosis. Just what I need another diagnosis, another dr., more tests, etc... Not to mention the pain and embarassment/sensitivity of the subject matter... If it is endometriosis, it would likely make a lot of sense and explain quite a bit, so I suppose it is not all bad. It could explain not only "time of the month" issues, but the bladder pain/spasms, back pain, IBS symptoms etc. Makes me wonder if it didn't all start with my appendectomy in high school. That is when a lot of things got worse... Thing is there is no great way to diagnose. Probably means a laparotomy... Then, treatment is not that great either. Messing around with all the hormones and potentially causing more harm than good. I do not want to go that route at all. I am ready to tell them if it is endometriosis that they can just give me a hysterectomy. At 26 that is kinda hard to say, but I do not want the pain etc. of endometrosis or the side effects of hormones. This is probably why my iron is so low, and has probably caused issues with absorbing all other kinds of vitamins and minerals. Possibly could even have caused the neuropathy. The hormonal dysfunction could also have contributed to my heat intolerance, weight gain, and hypoglycemia issues. It is just a rollercoaster... It doesn't make it easier that each doctor says this is another's domain. It was almost impossible to find a female gyno. here as well. That was awful! And I still have to see a nurse practitioner to finally maybe see an actual dr. It is never ending!!!! And they are making me wait forever, and it will be right before my next cycle, so I will likely have another one as bad as the other before any progress is made. Why does it have to be so difficult? Anyone who can relate? Anyone have the iron infusions? Endometriosis? Or anything simialar? I am looking for any and all info and advice etc. I don't know what to think anymore... And to make it worse the financial situation is worsening and I am being pushed to find income, but I have found nothing that I could do on a regular basis and not get fired for being unreliable etc... Urrgghh! Sorry about the length! Any thoughts, ideas, info. on these issues/treatments? Especially endometriosis- I am new to it and not incredibly knowledgeable. Thanks!!!
  10. Oh my, I am struggling to try to put my thoughts into words and then to type them tonight. Yes, so you have been talking about ivIg in regards to small fiber neuropathy and not the umbrella term of dysautonomia. I think what I was trying to describe or talk about was dysautonomia that is caused by small fiber neuropathy. Because small fiber neuropathy can present in a multitude of ways and not always as dysautonomia. Because this is a board for dysautonomia, I guess I was just trying to clarify or look at it purely from a dysautonomia viewpoint. As far as discussing it in terms of autoimmune neuropathy, I guess I was just not assuming that the original poster was discussing purely autoimmune neuropathy. I did see that you were discussing it in regards to that though. The thing I am still not sure about is that there must be a reason that ivIg is used mainly in large myelinated fiber neuropathies and not as often in PURE small fiber neuropathies. It would be different though if you had large and small fiber involvement due to an autoimmune cause. I keep confusing myself tonight, so I am not sure I make sense anymore... I think though what I am trying to say is that I am not sure how much it would be used for someone who has purely small fiber neuropathy and is presenting with no other identifiable conditions than dysautonomia. If they also have an autoimmune disorder that ivIg would be indicated as a treatment option, that would be different. You can be determined to have autoimmune small fiber neuropathy by a blood test and not necessarily have any obvious signs of an autoimmune disorder. Not sure if that makes any more sense? I think I am giving up on my brain tonight. It has decided to not cooperate! Uggh!
  11. Ok, so I did decide to go back and look it up. As, far as the side effects I must be confusing it with something else because it does not sound like they are that serious very often with ivIg treatments. Also, when I looked at what conditions they use it to treat... it mentions ACUTE Idiopathic Dysautonomia, CIDP, MG, Lupus, etc. When it is talking about neuropathies it looks like they mainly treat LARGE fiber neuropathy with ivIg, but small fiber not as much. It seems to be used more for demyelinating forms of neuropathy. So, for most of us it does not sound like it would be that helpful or less you had another condition that indicated its use, or you have a lot of signs of an autoimmune type disorder, but no clear diagnosis. What do others know or think? Forgot my link: http://emedicine.medscape.com/article/210367-overview
  12. Hi, I thought I would jump in even though I do not know that much on the issue... I do have small fiber neuropathy and no dr. has ever mentioned to me ivIg as a treatment option. But, I have seen it here on the board and in research. I really have always had the feeling that it is used very little for dysautonomia. Likely due to the cost, not knowing enough about dysautonomia to really know that it would be a good choice of treatment, and also I though there was a high risk of relatively severe side effects from the treatment (or am I confused with something else?)? I think that when it is used for someone with dysautonomia they will often have at least one other condition that helps them decide that it would be an appropriate treatment. So, if someone has another condition that also can be treated with ivIg, they are more likely to try it. It may not then actually be for only treating that persons dysautonomia. Not sure if that makes any sense??? But, from what I have seen and heard it seems to be one of the very last treatments they try and symptoms have to be severe enough for them to want to use it. Also, there are many forms of dysautonomia and I think that ivIg would only be a possible treatment for a few of the types. Then you of course get into whose definitions of the types of dysautonomia you are talking about and what causes them etc. I think that I know of only 2 or 3 people on the board that have tried it. Also, there are likely many drs./hospitals/areas of the world that for various reasons would not want to or legally be able to use it for particular diagnoses. Larger hospitals may be the best places to find drs. comfortable enough with prescribing it. That probably doesn't help, but thought I would throw my 2 cents in...
  13. Hi again! I have been posting very rarely for a while now. I keep hoping to get back to the board more (writing, that is... I do read the board somewhat frequently.) I guess I feel like I owe an explanation to everyone, because I know sometimes I ask questions and then haven't been the best at responding or participating in other's posts. I apologize, and hope to get better at responding. I have a hunch that most of you know the feeling I have been experiencing... I have just gotten so frustrated and fed up with everything health related that when it comes time to chill on the computer, I just want to get away from health related anything. So, no, my lack of appearances on the board does not mean I am feeling better, but just fed up and avoiding too much of anything health related. Now that I have done that for a while, I am trying to get back into being my own advocate and trying to find some progress in all things health related, and do less spinning of my wheels. To my question: (one of many to come I am sure... ) As many of you know I was finally tested properly and found to have a low ferretin level (wow, it's been about a year now!), indicating that I have iron deficient anemia. My original test was 3 and I think as high that I have tested since is 13 with oral iron supplements. But, that is still quite low, and I can feel it is low now, and does make my symptoms worse. So, I know that it is something that I want to concentrate on treating. I have been trying to do better with food, and take the supplements. But, my GI system does not like the iron, nor does my toilet. (TMI, I know... ) But, it only makes a bad situation worse, when someone like myself has to plunge a toilet too often... that really sets off my symptoms. So, I am quite done with the oral iron that I have been trying. It also makes my GERD/nausea worse as well. Also, this is one of the three pills a day that they want me on! And I tried every other day or once a week. It does not matter. Any of it is bad. So, I talked again with my PCP and he brought up testing to see where I am currently and if still low to try IV iron supplementation. SO... Who has tried IV iron? How did it go? What do you recommend based on your experiences? I have heard that people can develop a lot of not so fun side effects, so I am not sure that I even want to go this way??? I am very sensitive to meds etc. Anyone else have experience with???
  14. I think you may find it helpful by looking at it from a "big picture" viewpoint. Many things overlap, but not all of it may apply to you. Not sure if others with OH and not POTS have found it helpful?
  15. Goodness! It seems like things have been never ending for you! I am not sure if I have replied much before, but I have tried to keep up somewhat with what you are going though. I just haven't had the patience etc. recently to type much. But, I did want to finally comment, and say that I can not believe what all you are going through, and the total lack of medical help/answers that you have gotten. I am certainly hoping that there is a breakthrough for you and your medical team soon. Can they consult with other top hospitals like John Hopkins, Mayo, Cleveland Clinic etc? I can not remember if they have looked into and ruled out something like Periodic Paralysis? Also, have they looked at Chiari/Tethered Cord and/or anything that could compression parts of the spinal cord when standing? B/c as you say it is orthostatically linked. I hope they find some help and answers for you soon!
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